Sleepless in FAS Land
How to Help Your Child Sleep Better
Helping a child with FAS to sleep better can be a real challenge. Besides being overly sensitive to external stimuli (including sound), our children actually seem to be able to survive on less sleep than normal. This can be very tiring for the mother of an infant who cannot sleep more than 2 hours at a time, or a toddler who does not take naps, or a child who is still awake and wanting to play at midnight.
Children under the age of 18 normally require between 9 and 12 hours of sleep each night. Anything less than 8 hours of sleep could mean that your child is suffering from sleep deprivation. Sometimes I wonder if this is not a major factor in the irritability and moodiness we see so often.
Below are some questions and answers from other parents of children who are alcohol exposed and have problems sleeping. Be sure to check with your doctor before trying any over-the-counter medications or using various techniques. A good psychiatrist or psychologist might be able to pinpoint any psychological factors, such as fear or stress, and can also suggest some cognitive therapeutic techniques.
Help! My daughter has serious problems sleeping since going off all medications. In the last few months, I've tried Aluna, Tylenol PM, Benedryl, Drixoral, Sudaphed - all of which made her hyper. The doctor prescribed valium, which did nothing whatsoever, and Ambien, which caused a seizure, requiring EMS. Of course, we've also tried... scented pillows, vapor baths, various teas, Calmz, Rescue Remedy, massage, music of all genres, white noise, ocean sounds, forest sounds, reading, low lights, no lights, bright lights, sleeping with a dog, sleeping with a cat, sleeping with a turkey and last night, sleeping with a naked-neck chicken. I'm here to testify that none of these things work.
There's a paradoxical effect that medications have in children and some
adults in which the medicine has the opposite effect.
That's why, as it was explained to me, that stimulants like Ritalin and
caffeine may calm children with ADHD and antihistamines often cause children
to become overstimulated. One example I was given is Phenobarbital (a
barbiturate I guess) often causes children to become overstimulated. Many
parents have noted a paradoxical effect in their children with FASD with
other sedatives as well. To their great dismay since the sedatives are
usually given before some tricky medical procedure. Yikes!
It's 11:24 and K is wandering the
house, not able to sleep because she just can't find anywhere comfortable
enough to sleep. I don't dare go to bed until she's out. She must be super overloaded or wound up. We went for a
mile hike today in the evening when it was cooler. We will have to do
it earlier in the day or never again. She just can't seem to settle down. It
is driving me crazy. I can't think of anything else that would be making it
different for her. She's the one that begged for us to go and was the leader
and picked where the walk would be. We thought it would be great and help
them all go to sleep. Worked for all except K. And it's not that she wants to stay awake. She
wants to sleep too, just doesn't or can't is a better word probably.
If sleep deprivation is getting less then 9-12 hours for kids, I wonder what
it is for adults? One Dr. thinks I may have sleep apnea, I don't ever get to
get into a deep sleep and that's why I am so tired all the time. I wonder if
they ever consider life with FASD and how little sleep we get?
Ah, 11:55 and she's finally out. Sleep, here I come.
After dinner, I give my kids Melatonin, which is sold over the counter. I checked with my doctor first, and he said it was okay to try. (See Precautions)
When my son was very tiny, just 12 pounds at age one, and I had to take him on a long-distance airplane ride, I asked the doctor what I could give him to help him not to cry while on the flight. He was one of those touchy, sensitive babies who cried at the least bit of stimulation, and was not easy to console. I was so afraid of upsetting everyone on the plane. The pediatrician told me I could give him a dose of children's Dramamine, as it is relatively safe and has few side effects. Just before boarding the plane, I game him the Dramamine. He slept peacefully for the entire flight. I continued to give him Dramanine on occasions where he needed to sleep but was bothered by upsetting environments (visiting relatives, and situations like that). Dramamine is a muscle relaxant, and since my son has hyptertonia (too much muscle tone), this probably helped him to relax enough to sleep in a more normal fashion.
When my daughter started on a low dose of Risperdal (one mg. in the late afternoon), I noticed that she started to sleep better. Her mood is considerably lighter and she is not as argumentative or irritable like before. Her sleep is less disturbed, and there is not as much daytime sleepiness. I wonder if the benefit of this medication comes as an inducement to better quality of sleep at night.
When my son was getting neurobiofeedback therapy, I noticed that he was able to fall asleep better. I think it helped that he was able to learn to calm himself when he felt anxious or restless.
The only word of hope I have here is that at age 25, my daughter is sleeping much better than she did at age 17. This does not mean her sleep is great but it is better, less shaking and fewer trips to the bathroom.
What I give my daughter to aid in sleeping (she also gets it in the
am and at noon) is 5-HTP. Brittany was always a very restless sleeper and
had difficulty getting to sleep yet is a kid that really needs at least 8-10
hours nightly. I started her on 5 HTP when I took her off Ritalin 3 years
ago. I started her with a small dose (25-30 mg, 3x daily) and she now takes
1000 mg in 3 doses 4-2-4. It also helped with her headaches and pain
sensitivity. 5 HTP is a precursor to serotonin and crosses the blood brain
barrier. Unlike tryptophan that we get from food that the body may divert
elsewhere, 5 HTP goes to the brain and helps make more serotonin. The
prescription SSRIs work similarly but they keep the brain from reabsorbing
the serotonin the brain makes. My understanding is that 5 HTP helps the
brain make more. SSRIs have side effects. The only side effect noted for 5
HTP is some possible gastrointestinal discomfort in the beginning which will
go away. My daughter never complained of it, maybe because I started so
slowly. It has worked better than Ritalin or Dexadrine for my child. She
seldoms has any sleep problems now.
My son was one of those kids who didn't sleep much at all. I was successful in at least helping him learn to stay in his bed and be quiet so as not to wake everyone else in the house. I taught him some self-relaxation techniques: deep breathing; visualizing peaceful scenes; singing a lullabye to his teddy bear; saying "relax" very slowly over and over like a mantra. All of these things seemed to work, and eventually he was able to fall asleep by himself without me there to cue him to do the relaxation techniques. As an adult, he sleeps very well. This might be due to the medications he is taking now (Adderall in the morning, Paxil in the evening), or maybe he is just maturing and has developed more normal sleep patterns. He would sleep for 12 or 14 hours now, if I let him.
When I sat back and did some observations, I realized that when my son had ice cream for dessert, he was more agitated and hard to settle down at bedtime. There are other foods that set him off too, and I was able to figure out which ones by keeping track of what he ate and how well he settled down at night (or didn't). Now I am more careful about when I let him eat his trigger foods.
Sleeplessness was a cakewalk! I don't have any additional suggestions but maybe a glimmer of hope. R could survive on 2 hours of sleep a day. This went on for years. His bedroom was downstairs & ours is upstairs. We have since found out that he smoked in the linen closet, pushed his car out into the road so he wouldn't wake us up, took tons of pictures of the sunrise (at least 2 shots per every roll of film for at least 5 years), stole our toilet paper so he could decorate his friends homes, and of course he had to take his brother with him so he wouldn't tell on him. But now at almost 24 years of age he sleeps! He comes to visit, sits down & falls asleep. He gets home from work on Friday night & according to his girlfriend, he kisses her, kisses the baby, eats supper & falls asleep.
Now of course, there still is a lot of boy in him. He & his sister's boyfriend have forged a friendship that scares the crap out of me. They disappeared during the 4th of July gathering at our house & came home with some very evil grins on their faces. Now, I'm not about to let that one slide. I badgered him until he showed me what they had bought. 210 rolls of toilet paper. The boy his sister dated last summer has made it his mission to make sure we get TPed at least once a week for several weeks now. R decided it was pay-back time. I have since found out that my son, soon to be a Daddy again, is not too mature that he won't poop in a paper bag & leave it on someone's porch at 3 in the morning. Am I proud? No. Am I glad they didn't get caught? Oh yeah!! There's a $50 fine for each cylinder they have in their possession. But hey, my kid fixed that. They removed the cardboard cylinder.
You know, maybe I can't offer a glimmer of hope after all.
A follow-up from the first desperate mom who wrote "nothing works":
I was so happy that my daughter got to sleep just before midnight last night!
We have a new routine that seems to be working, so that we're able to sleep
from about midnight to about 8 am, and it's wonderful after getting 2-4
hours sleep per night for months.
Here's what we're doing. I know it seems over-structured, but that's what
she thrives on.
This has worked for about 3 weeks now!!!!! It means that she sleeps in the living room, but, as she says, "Whaddaheck".
- 9:00 pm she can watch a kid's TV show
- 10:00 she takes a bath
- 10:30 listen to music
- 11:00 is quiet time, no talking rule takes effect
- And by midnight she's asleep!!!!!!!!
Here are some links to articles that may be helpful:
Return to the FAS Community Resource Center